General Discussion
In reply to the discussion: We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier, [View all]pnwmom
(108,973 posts)Here's why.
The diagnosis of somatic disorder is made when doctors can't find an underlying cause to the symptoms: but there is always the very real possibility that there is a REAL physical cause and the doctors just haven't found it. (Or, in Justina's case, that Tufts doctors diagnosed it and BC doctors rejected the diagnosis.)
When I was growing up they thought asthma was psychosomatic. Then they found out it was caused by inflammation in the lungs. Other people have been misdiagnosed with a somatic disorder when they actually had multiple sclerosis, or other diseases. "Somatic disorder" is just a catch-all diagnosis that some psychiatrists will use when other doctors don't understand what is causing physical symptoms.
Now, suppose you are a person with very painful physical symptoms, like Justina had. You're having bouts of nausea and vomiting, or severe intestinal cramping and pain, or migraines. Just some of the symptoms that people with mitochondrial disease can have. You never know when the bout is going to start or how many days it will last.
Now imagine they've just told you that you're not physically sick. That you can control these symptoms with your mind. And they lock you up in a psychiatric ward. And now you're being rewarded when you feel well -- and ignored or "negatively" reinforced when you have symptoms. Think about it. When you're writhing in pain, they negatively reinforce your ("attention-seeking" behavior because they think that will help you feel better.
Can you understand why her parents referred to this as torture?
http://www.diagnosticrights.org/the-coalitions-letter-on-behalf-of-justina-pelletier/
10. Bader 5s approach of aggressive behavior modification therapy for children with somatoform diagnosis is an atrocity, and it is one the Court has sufficient evidence to recognize.
No somatoform diagnosis can be decisively confirmed because there simply is no science to support a direct correlation between the absence of medical explanations for symptoms and the presence of mental health disorders. As a result, somatoform diagnosis is notoriously inaccurate, and dangerously so.
It is unconscionable for those who treat somatoform disorder not to take stock of the great potential for diagnostic error in their field. If aggressive behavioral modification techniques are employed, severe emotional harm will certainly result for those diagnosed in error that is, for those whose genuine physical suffering and disabilities are repeatedly met with punishment designed to encourage impossible control. Aggressive behavior modification therapy for the physical symptoms of children who are actually medically ill is heinous. Because error in somatoform diagnosis can never be ruled out, it cannot be ethical for those techniques to be employed in the treatment of somatoform disorder in children.
The Court is aware that Bader 5 does routinely employ aggressive behavior modification techniques for children with somatoform disorder. Because the Court cannot be certain whether Justina Pelletier does or does not have somatoform disorder, or which of her symptoms are medical and which are somatoform, it is unconscionable to allow further treatment by BCH or any other facility where these techniques will be employed.